A New York family is experiencing the unimaginable as they watch an artificial heart keep their one-year-old son alive while he awaits a heart transplant — just two years after their daughter underwent surgeries for the exact same rare heart condition.
Brian and Ashley Cotter’s daughter Ruby was diagnosed with cardiomyopathy — an enlarged heart condition that makes it harder for the heart to pump blood — in 2019, two months after she was born.
She nearly died from the condition, but was kept alive with an artificial heart for three months until she could undergo a heart transplant.
Now two-and-a-half, Ruby is thriving — but just a couple of weeks ago, Brian, 37, and Ashley, 31, noticed their son Everett exhibiting some of the same symptoms that had first troubled them in Ruby.
Now Everett, who turns one on December 30, is surviving with the help of his own artificial heart as his family anxiously awaits news that he, too, will be the recipient of a donor heart.
Both of Brian and Ashley Cotter’s children have had the same rare heart condition – and now two years after their daughter Ruby got a transplant, their son Everett needs one
Everett, who turns one on December 30, was recently rushed to the hospital and is surviving with an artificial heart as he awaits a donor heart, which can takes up to nine months
In 2019, his sister Ruby, then just two months old, was also rushed to the ER and nearly died. She, too, had an artificial heart and waited three-and-a-half months for a donor heart
The Cotters’ heart-wrenching story began on September 4, 2019, two months after Ruby was born.
‘She woke up not herself,’ Brian told DailyMail.com. ‘She didn’t want to eat, she was dry heaving, and her limbs were very cold. Her core was very warm and we found all of this very strange.’
They called her doctor, who told them to take Ruby straight to the Stony Brook University Hospital nearby on Long Island.
‘We got her there just in time for her life to be saved,’ Brian said.
Within 10 minutes of arriving, Ruby stopped breathing and had to be intubated. Doctors managed to stabilize her, but she was kept in the pediatric intensive care unit with wires and tubes coming out of her little body.
The hospital ran tests, including an echocardiogram, which revealed that Ruby had cardiomyopathy, which causes the heart to have trouble pumping blood through the body — and can lead to heart failure.
The condition is thought to be caused by a genetic predisposition or a viral infection, and affects about 4 in 100,000 infants under the age of 12 months.
Ruby (pictured) was the first to be diagnosed cardiomyopathy, a condition that causes the heart to have trouble pumping blood through the body – which can lead to heart failure
After Ruby (pictured) stopped breathing, doctors intubated her. Once she was stabilized, they performed surgery to implant a pump to work as her heart as she awaited a transplant
The next three months with the Berlin Heart were spent in physical therapy, with Ruby learning how to do things like hold her head up and bottle-feed again
Finally, on December 22, 2019, Ruby underwent another surgery to get her new donor heart
For Ruby, it had caused heart failure, requiring her to be sent to New York-Presbyterian for further treatment.
She was put on IV medications, and after a week, doctors tried to take her off the support she was getting for breathing and eating — but when they did that, ‘her heart rate jumped up to 300 beats per minute,’ Ashley told New York-Presbyterian’s Health Matters.
So Ruby was put on the transplant list, which can take three to nine months.
Until a donor heart came through, she could have remained sedated and intubated — but instead, doctors implanted her with a Berlin Heart, an external pump that maintains blood flow in babies with heart failure.
That surgery went well, but as she recovered and gained strength, her mother said ‘she would play and lift her Berlin Heart with her feet and give me a heart attack.’
‘It didn’t bother Ruby that she was in the hospital or that she was hooked up to a machine,’ Ashley added. ‘The nurses loved that about her because it means she is resilient, and nothing will bring her down.’
The next three months were spent in physical therapy, with Ruby learning how to do things like hold her head up and bottle-feed again.
Then, finally, on December 22, 2019 — about three-and-a-half months after she first went to the hospital — she underwent another surgery to get her new donor heart.
‘We knew she could have died on the operating table and it was terrifying. Me and my wife cried happy tears when we were told she was ok after ten hours or surgery,’ Brian said
Since then, she has taken medication and required checkups, and she may need up to two more transplants in her lifetime
Brian told DailyMail.com this week that Ruby is ‘doing very well’
‘She is funny and smart. Very strong and very sweet,’ Brian said of Ruby
‘To see your daughter go through something like this horrifying,’ Brian told Metro last year. ‘Seeing her go in for the operation was the thing we feared the most as parents.
‘She is an extremely rare baby, only 0.4 per cent of children are born with with the condition Ruby has and only a third of those end up needing a heart transplant. She has been so strong and has amazed us at how well she has done.
‘We knew she could have died on the operating table and it was terrifying. Me and my wife cried happy tears when we were told she was ok after ten hours or surgery.’
Since then, she has taken medication and required checkups, and she may need up to two more transplants in her lifetime.
But Brian told DailyMail.com this week that she is ‘doing very well.’
‘She is funny and smart. Very strong and very sweet. Of course there are still many challenges for her. There will always be. She takes a lot of medication and will always have to. She also goes to the city to see her team every three months for a biopsy and check up,’ he said.
The Cotters thought they were out of the woods when they were hit with another shock: A couple of weeks ago, their son Everett fell ill, and they recognized the signs that something was wrong.
A couple of weeks ago, the Cotters’ son Everett fell ill, and they recognized the signs that something was wrong and brought him to the hospital
‘Never in a million years did we think our happy healthy boy would be where his sister was almost two years ago,’ the couple said
On December 8, Everett lost his pulse for four minutes. He was put on ECMO, and soon got his own artificial heart, this time a Jarvik Heart
‘Ev was eventually showing the same signs as Ruby but it took longer,’ Brian explained. ‘He acting strange, so we made an appointment to see his pediatrician.’
‘We were always worried about him having the same condition,’ he admitted. ‘We were traumatized from our experience with Ruby.’
Still, the signs were good that he would be fine: Neither Brian nor Ashley had the mutated gene that might have caused Ruby’s heart condition, ‘and the chances were less than one per cent of it happening to our next child,’ he said.
They’d also done tests on Everett, and saw that he was big, healthy, and happy.
But as they watched him develop Ruby’s symptoms, they grew too anxious to wait until the following day for a pediatrician appointment and made a trip to the emergency room instead.
After six hours, they were told to go home, and tests determined that he had rhinovirus — which doctors said would ‘run its course.’
But by Monday, December 6, Everett was worse — and presenting similarly to Ruby when she was in heart failure.
‘Hopefully Everett will continue learning how to be a toddler because of our choice,’ Brian said
Everett’s implant surgery was successful. He is recovering, and photos and videos show him in the hospital hooked up to countless tubes and wires while he awaits a transplant
‘So my wife brought him to the ER and found out shortly that his heart was enlarged,’ Brian said.
Everett was transferred twice, ultimately ending up at New York-Presbyterian — where he went into cardiac arrest and was put on ECMO.
‘Never in a million years did we think our happy healthy boy would be where his sister was almost two years ago,’ the couple wrote on Instagram. ‘We are broken. We did all of the tests, the scans, the checks with nothing to show. He was thriving, happy, strong. But here we are again. There are no words to describe this feeling, our sweet boy.’
On December 8, Everett lost his pulse for four minutes. He was put on ECMO, and his parents had to make a decision: Would they put have him implanted with the same Berlin Heart that sustained their daughter for months, or would they try a new device called the Jarvik?
‘Because he is bigger than Ruby was — and also moving so much more — we decided to be a part of the Jarvik trial,’ Brian said.
Loved ones have pitched in to help. A GoFundMe page has been set up by one friend, while another friend is accepting donations on their behalf
‘We felt it would be better for him. We also think that it is a step in the right direction for future children with that will need it to survive until their transplant. Hopefully Everett will continue learning how to be a toddler because of our choice.’
Everett’s implant surgery was successful. He is recovering, and photos and videos show him in the hospital hooked up to countless tubes and wires, including a nasogastric tube (NG tube) that carries food and medicine to his stomach through his nose.
Now the Cotters are focused on keeping the little boy comfortable as he awaits his heart transplant, which could take months.
‘[We’re] making sure he gets back to eating and moving. Making sure he is as healthy as possible so when a heart is available for him he can survive the surgery and heal quickly. Keeping him happy and making sure he feels loved is the most important,’ Brian said.
One difference this time around is that they have two children to care for — so Brian and Ashley are taking turns being at home with Ruby and living at the hospital with Everett.
One difference this time around is that they have two children to care for – so Brian and Ashley are taking turns being at home with Ruby and living at the hospital with Everett
Brian said Ruby ‘knows something is going on but doesn’t understand. She looks for her brother sometimes and still says night night to him at bed time’
‘Ruby has been doing well,’ Brian said. ‘She knows something is going on but doesn’t understand. She looks for her brother sometimes and still says night night to him at bed time.’
Loved ones have pitched in to help. A GoFundMe page has been set up by one friend, while another friend told Patch that she is accepting donations on their behalf, as well as toys for Ruby — who loves Minnie and Mickey Mouse, drawing, and Barbie dolls — and Uber Eats or Door Dash gift cards for the parents.
‘We love our children more than anything and would do anything for them,’ Brian told DailyMail.com.
He also stressed the importance of organ donation, noting that someone else’s generosity has mean life for their daughter.
‘It’s not easy knowing your child needs a heart from another child to live. It’s not easy knowing a child is going to pass in order for yours to live.
‘It’s something we think about every day when we wake up to see our happy daughter. Organ donation is important and it saves lives,’ he said.